Is it common for people with pernicious anemia to go on to develop thyroid problems? I have had pernicious anemia for seven years no and over time it feels like the b12 hasn't been working with my symptoms. Between the age of 20-23 I was just having the regular three month b12 shot from the GP but from the age of 23-27 I have been self injecting with the help of this forum. No matter how much b12 I seem to inject I never feel "right" in myself and I have just lost the will to do anything remotely active.
My sister has recently been diagnosed with pernicious anemia at the age of 22 which is similar to me at 20. She said she feels really weak and her iron was at a low of 22 when she first went to the GP but they said it was fine, it was only after she went back and it was at 7 they said that she needed tablets. I am wondering if it has been lack of iron making me feel this way as she has been shedding hair and has gone early grey and those are two of my physical symptoms.
The GP always told me my iron was "good" whatever that means and I am worried that if I leave this for too long I will just wither away. I am injecting hydroxoB12 once a week sometimes twice it just seems to do nothing.
Could it be lack of iron just like my sister as it would possibly run in the family or mayb an underlining thyroid problem? I am not sure if pernicious anemia can cause thyroid issues or low iron as not one GP has ever mentioned this to me.
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Krealan
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The symptoms of thyroid and B12 deficiency have a significant overlap and it is quite common to have PA and thyroid caused by autoimmune problems together. See this article on hashimoto's
premature greying isn't actually a symptom of B12 deficiency - just that there is a high correlation between PA and people who went grey very early on - so probably an underlying genetic link that hasn't yet to be established.
Iron levels don't show as much variation in the general population as B12 does so if your doctor is telling you that they are fine then they should be okay. Please note that unlike high B12 levels in blood, high iron in blood can be toxic.
There may be more than one thing going on in your case - suggest that you get your doctor to look at your iron levels and your thyroid, and ask around your family to see if there are histories of thyroid as well as PA problems.
Does iron anemia run in the family? If my sister has it is there a greater chance that I will?
I am going to book an appointment tomorrow to get my blood checked. The problem is the Dr said my sisters iron was good at 22 and didn't give her anything. She then ended up falling to 7. She saw another Dr who said that 7 was extremely low and that she would have treated her at 22 also! She went on to mention that you need above 70 for your body to grow hair properly.
I will ask them to check any thyroid problems too.
sorry - think you may have misunderstood my response - I mentioned asking if there was a history of pernicious anaemia in your family - this is very different from asking if there are problems with iron anaemia.
Although PA and iron based anaemia's can often occur together (probably because the iron based anaemia is resulting from poor absorption) there are lots of things that can cause an iron based anaemia ...
The Anaemia caused by PA is about the body not having enough B12 to regulate the production of healthy blood cells. Iron based anaemia is about the body not having enough iron to produce haemoglobin which is essential for red-blood cells to do their main job which is transferring oxygen from your lungs to cells where it is needed.
Your sister had a good dr if she wanted to get her ferritin above 70. Quite right. Ask if you can have a ferritin test, find out what yours is. You don't want a very high ferritin level, but you don!t want to be at the bottom of the range.
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Ask the receptionist for a print out of your blood results. This is your legal right, though there may be a small charge. Keep them in a file so you can chart changes. Your gp has no time to study them in detail.
I've actually booked an appointment for two days time with the same dr because I was actually very impressed when my sister told me that, I even said out loud "wow she's a good dr". She is a young dr so no doubt she has recently left medical school/internship with all the up to date information on the disease, and anemia as a whole.
I am going to do what a lot of people have suggested here and take a look at my recently blood test but also my blood tests from the past and see if there is some kind of pattern.
Does anyone know what a "normal" iron range should be for an adult male at the age of 27 also?
I have read that B12 works with B9/Folate in the body - so it may help to introduce a GOOD B Complex - like Thorne Research for example. Also research Folate v Folic Acid - some people do better with the natural Folate. Folic Acid is synthetic. Most people are fine with the latter I am told. So it may come down to personal choice.
Regarding the Thyroid - do ensure you have the correct testing - the FULL panel - TSH - FT4 - FT3 and the anti-bodies Anti-TPO and Anti-TG. Most GP's just test the TSH which tells you so very little about the thyroid hormones and how they are performing in the body.
Always obtain copies of ALL your blood test results - you are legally entitled to them. Maybe go back a few years and you may find some surprises Never accept normal - when your GP means in range - it is WHERE you are in the range that is so important. Your TSH should be no higher than 2.5 and the FT4 and FT3 should be in the upper part of the range for you to be well. The TSH in a healthy person is around 2.
When you have your results you may wish to post on the Thyroid UK forum here on Health Unlocked where there are over 44,000 people waiting to help. You can find your way there through the link above to the main Thyroid UK website
Also have the Ferritin - Folate and VitD tested - as these are needed at good levels for your thyroid to work efficiently and for you to feel well - even in the absence of a thyroid condition.
Well I wish you luck with that one. Having spent over 4 years on the Thyroid UK forum with over 44,000 members I read everyday that Docs/Labs are refusing to do the FULL profile if the TSH is in range. So WRONG. Private Testing is available through Thyroid UK - so do ask if you would like the link - or find it in the link I posted earlier for Thyroid UK.
Blue Horizon will send Testing Kits to you home and results are back so quickly. Not sure your Doc will know about a B Complex with your B12 and so on ..... unless of course you are one of the very lucky ones ........
I am suppose to be taking a B complex with b12 injections? This is the first time hearing this. It is so sad that most of the information I have on my condition I had to get myself. I really feel failed by the NHS and doctors. People think I am crazy when I say I don't trust doctors anymore, they just look at me with this blank stare and go "but they're docots?".
I feel so blessed that I found this place to gather my information and post my concerns with like minded people.
Krealan your sentiments are the same as mine re doctors . I just don't trust what they say anymore . One of the problems with having PA is that there is no interest in it from the pharmaceutical industry .( B12 being a vitamin -unpatentable -no big bucks to be made ) Therefore doctors get no information on it from there . There are no financial benefits to be had for diagnosing it . ( you have seen that list of cash benefits for diagnosing certain conditions haven't you ? ) You know that some surgeries have nurses that are paid for by the industry ? I only found this out when reading a copy of the British Medical Journal when a doctor had written a letter saying she found the pracitise unethical . The whole business of having PA has disillusioned me no end . Thank goodness for the PAS and all it's marvellous members , not forgetting our Martyn Hooper . I don't know where I would be otherwise .
I've just been looking at a piece of research pub Nov 2006, Gastroenterology, lead author Lagarde S, they looked at 95 patients with PA and 27.6 % had iron deficiency on their ferritin counts. they were all young females. So I bet you are right, the gp is telling you your ferritin is fine, but it is probably at the bottom of the range.
Interestingly, 12.6 per cent had microcytic, not macrocytic anemia, and I've seen a ref elsewhere this week saying that is fairly common in young women with PA.
they looked at 95 patients with PA and 27.6 % had iron deficiency on their ferritin counts
Rather than being cause and effect this is almost certainly down to a common cause - gastric atrophy.
Autoimmune Metaplastic Gastric Atrophy (AMGA) kills off gastric parietal cells (GPCs). Two of the things these cells do are - 1. Make Intrinsic Factor (IF) which is required for B12 absorption; 2. Make hydrochloric acid (HCl).
The lack of IF leads to B12 deficiency (PA). One of the things that happens with a lack of HCl is that iron in the diet (or in iron sulfate pills) finds it more difficult to get into solution. And it needs to be in solution to get absorbed.
So the one cause (AMGA) can lead to the two effects - Pernicious Anaemia and Iron-Deficiency Anaemia. One of these (PA) leads to large red cells (macrocytosis), the other leads to small red cells (microcytosis). The two together can give a normal average cell volume (MCV) and hide both problems.
Exactly. The cause of PA also produces the effect of ID in young women. And I would guess some gps might not know that in young women microcytic anaemia should raise suspicion of AIG.
I feel tired literally all the time and it makes me depressed. I am only 27 but feel as if I am in my 60's. I just went over my parents house to help them mow the lawn outside and after literally 15 minutes I was done, I felt like I was going into a coma with my heart racing.
I have tried everything to make myself feel better for my family and my partner whom I just got married to but nothing makes my energy kick up.
I should mention I am male becaue someone mentioned that it was in females they saw low iron but I am at my witts end trying to figure out what is wrong. I go to bed having mini panic attacks thinking there could be something seriously wrong and my GP wont do a damn thing.
I have done a lot of research on autoimmune gastric atrophy thinking this was the problem and even went as far to supplement betaine HCL capsuls with my meals. It was a very expensive thing to keep up monthly and I saw no change so I stopped after three months.
I just wish my GP could find the problem and fix it because I just want to live my life and get on with things. To drive the point home last night I went to sleep for 12 hours and woke up refreshed but after about two-three hours was exhasuted again.
I am pretty sure they said I had enlarged red blood sells when I was 20 many years ago. He sat me in a room told me I had PA and gave me a sheet of paper and that was it, left me to rot for many years on one injection every three months. What's worse is my B12 level seems high because I self inject at home with methyl first and now hydroxo.
Lately I have been injecting quite frequently thinking I just need more than the average person x3 times a week of 1mg/1ml hydroxo.
Sorry for the frantic nature of my post and just dumping all this information I am just lost and to be frank quite scared of my physical and mental health.
Get to another dr or go private. Talk to your dr that you feel you are becoming mentally ill and he needs to get everything tested. I went private in the end.
But apart from that you might be far over vit b and that’s also not good. I felt much better after starting zinc and selrnium strong doses as I was becoming like you but am now stable. Try the zinc and selenium and only inject once a week. Try to inject a combo vit b not just b12. Don’t keep injecting. Something else is wrong.
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Never accept normal - when your GP means in range - it is WHERE you are in the range that is so important. Your TSH should be no higher than 2.5 and the FT4 and FT3 should be in the upper part of the range for you to be well. The TSH in a healthy person is around 2.
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